What Christian parents should do if their child reaches adulthood but can’t make decisions for themselves

Lynn McCann recently wrote about young people with additional needs reaching adulthood, and what churches can do to welcome, affirm and provide for them. So I thought I would look at life at home when a young person with learning disability reaches this stage, and adulthood involves many decisions which they aren’t able to make for themselves.

When my daughter was twenty-five she suffered a significant injury during an autistic meltdown. A skilled surgeon operated on her for three hours to repair the damage. The next day she was so distressed at being in hospital that it was a constant struggle to prevent her pulling off the dressing and risking further injury. The surgeon told us to take her straight back to her familiar surroundings in her care home.

At this point, a social worker who had never met my daughter turned up at the hospital. She announced that she was overruling the surgeon and preventing my daughter’s discharge from hospital because she would need one to one care during her recovery, and funding for this had not been agreed. The care home replied that they would fund the care for seventy-two hours, giving three days to sort out ongoing funding. The social worker refused to allow this.

I offered to take her home to my house to prevent her self-harming in hospital, and care for her myself for as long as necessary. The social worker glared at me coldly over the top of her glasses and said, “We can’t have just anyone coming in here and saying anything they like!” as if I were a total stranger who had walked in off the street, rather than the mother who had cared for her at home throughout the first twenty-two years of her life.

The charge nurse advised me to apply to the Court of Protection to become a Personal Welfare Deputy for my daughter

The charge nurse advised me to apply to the Court of Protection to become a Personal Welfare Deputy for my daughter, which would empower me to take decisions in her best interests instead of being overruled by red tape, funding constraints or someone else’s opinion. I investigated this, made an application which was swiftly granted, and since that day no decisions can be taken about my daughter’s best interests without taking my views into account. I also followed the Court’s advice to become her Property and Finance Deputy.

So what happens when children become adults and aren’t capable of making decisions for themselves? There have to be compelling reasons for the Court to appoint a Personal Welfare Deputy – often because someone has profound learning disability and complex medical needs covering a number of different clinical disciplines with which no single doctor or hospital department would be familiar. Only three to four hundred Personal Welfare Deputyships are granted each year, compared with fifteen thousand or more Property and Finance Deputyships. So it’s accepted that many people, especially with learning disabilities, will be unable to manage their own bank accounts and purchases, but also that most people’s medical or social needs can be understood and accommodated by competent doctors or social workers.

The first step is to arrange for a mental capacity test. The Mental Capacity Act makes the following stipulations:

(1) A person is unable to make a decision for himself if he is unable—

(a) to understand the information relevant to the decision,

(b) to retain that information,

(c) to use or weigh that information as part of the process of making the decision, or

(d) to communicate his decision (whether by talking, using sign language or any other means).

(2) A person is not to be regarded as unable to understand the information relevant to a decision if he is able to understand an explanation of it given to him in a way that is appropriate to his circumstances (using simple language, visual aids or any other means).

(3) The fact that a person is able to retain the information relevant to a decision for a short period only does not prevent him from being regarded as able to make the decision.

(4)The information relevant to a decision includes information about the reasonably foreseeable consequences of—

(a)deciding one way or another, or

(b)failing to make the decision.

It sounds daunting, but the process soon becomes very familiar and gives you peace of mind that you can ensure your young person’s best interests are protected

So, if you decide to apply for deputyship, what steps should you take? The first is pray! God’s peace in your heart will guide you. Secondly, arrange for a mental capacity test if not already done. It’s best to ask a professional such as a GP or learning disability nurse, a social worker, occupational therapist, or support staff if the person lives in a care home. Thirdly, take a deep breath, because the fee to apply for deputyship currently stands at £421, and if both types of deputyship are applied for, this is payable twice.

If your young person has PIP or DLA and Universal Credit as their only source of income, you will be able to claim most or all of this back once the deputyship order has been issued (maybe churches could consider helping out with these costs, which parents of non-disabled young people will never have to fork out). You will also have to buy a security bond, so that if you were to abscond with your son or daughter’s money, they would be insured against the loss. This is a legal requirement, no matter how honest you know yourself to be.

God knows the additional things we additional needs parents will have to do for our adult offspring, and he is there to help us every step of the way

There is also an annual deputy supervision fee, but if your young person has only the above benefits for income it will be remitted in full and they will not need to pay it. Fourthly, fill in and submit the forms which you can find here, with all the necessary information. If you find this difficult, a solicitor can help, but that would add to the cost.

You will have to submit a yearly report explaining why and what decisions you have made on the person’s behalf, and who else you consulted; but this is quite a straightforward form to fill in and I’ve never found it difficult. You will have to state the opening and closing balance of their money for the year, how much they have spent in various categories (such as transport, gifts, personal effects, etc.) and list any single payments of over £1000. Occasionally you may be asked to submit a year’s bank statements (this has happened twice in the seventeen years that I have been a deputy).

Read more:

What I wish churches knew about dyslexic children 

Autism, meltdowns and shutdowns – practical advice for Christian parents 

Rethinking disobedience when your child has ADHD

It sounds daunting, but the process soon becomes very familiar and gives you peace of mind that you can ensure your young person’s best interests are protected. James 1:5-6 says: “And if, in the process, any of you does not know how to meet any particular problem he has only to ask God - who gives generously to all men without making them feel foolish or guilty - and he may be quite sure that the necessary wisdom will be given him. But he must ask in sincere faith without secret doubts as to whether he really wants God’s help or not.” God knows the additional things we additional needs parents will have to do for our adult offspring, and he is there to help us every step of the way.